Listing for transplant

Hi everyone as most of you know went to kings college hospital on 4th September for assement it lasted 4 days they let me home Thursday evening and called me Friday to let me know they are going to list me have to go there next Wednesday for blood tests and a learning session then they will list me, so happy but nervous as well I've come this far so I must go further with confidence and positivity thank you all for all your advice. Annette

24 Replies

  • That's great news, the education day isn't the most exciting of days , take food and drink as there is none provided. It was horrible waiting for that call, but a relief as far as I'm concerned.

  • Yes should I feel the same way, liver doctor told me to bring food with me, Annette

  • Fantastic news. Yes waiting for the call is nerve racking but worth it. Terry is now 2 months post transplant today & is doing very well.

    All the very best.xx

  • Thank you hobo will be nervous next week when they list me. Annette

  • I wish you all the very best. Keep us informed ! xx

  • So pleased for you that your on the transplant list. Wishing you the best xx

  • Thank you Annette

  • Thank you so much. Annette

  • That's amazing news.The main nerves I had was before I got listed. A transplant is the best chance you'll get to get your life back on track.

    The information day is quite a long day especially when you're not 100%. They also go into some detail about the operation. I suppose for many having that knowledge is important, but I remember thinking I really didn't want to know because as incredible as it all is it's mind blowing what your body goes through. It was shocking when they tell you about the tube's and wires you'll wake up to. BUT I can assure you it's really not as bad as it sounds.

  • Thanks for replying I to am extremely nervous, but I want to live. Annette

  • great news. It is all scary. I'm 4 months post transplant. I got my call the early hours after id been to clinic good luck 🍀 it happens when your not expecting it. I had packed and unpacked so many times and didn't need much of it as was in ICU for 8 days travel light 😁

  • That's exciting/scary news, you wouldn't be human if you weren't nervous I guess. Wishing all the very best to you. Hope it all goes well and your wait isn't too long!!

    Hugs Helen x

  • Thats such good news for you 😊

  • Great news Annette. I was fortunate that my assessment was 1 day at Royal London for tests and then the following week was 2 long days at Royal Free as I had recently (and coincidently) had a lot of the assessment tests as routine quarterly, yearly appointments just a couple weeks before so didn't need them redone,

    Don't get me wrong, I had many tests, met lots of medical team at assessment. I found the education "hit home" in places and it was for me, a reality check on what will happen. I am a "need to know everything" sort of person. I received a HUGE A4 booklet so I read everything again a day later at home which helped a bit to digest what I could.

    When I got my call to say I was to be listed, I was anxious all day and although I was told I would 100% get the phone call on the Friday - I didnt t get it from the doctor until 7.30pm that night.

    It was hard to accept but also felt a huge weight lifted to know I was closing one chapter on 10 years of PBC and starting a new chapter of the book as needing a liver transplant.

    Don't be afraid to ask questions during the education and just try and take in what you can my lovely.

    We are all in this together 💞

  • Thanks so much for your advice my daughter will be with me on Wednesday so she can take in a lot. Annette

  • Brilliant news Annette and about time too. Got my fingers crossed you get the call soon and all goes to plan.

    Lots of love, Katie x

  • Thank you Katie happened so fast but I really need this, how I managed the stress test I do not know with Ascites as well Annette

  • Great news and so wish you all the best.the education day is ling and own food so rewarding at lunch.i found the description of everything that will happen and be done really helped in the waiting. Biggest thing i took on board was as much as you dont feel like it excersise as much as you you can for the op so that you are strong for the op. I am now six months post op which was at King's College and boy all concerned at all stages and in my treatment and transplant as well as care in the wards i just cant praise enough as well as my post transplant care not forgetting at all the caring donor and their familly who have given me a sevond chance. so wish you all the best.

  • Thank you for advice it's really reassuring do you know if they provide transport when getting the call for transplant that's one thing I don't know

  • Hi, i had a false alarm for transplant on wed night and they called me again in thursday night,both times i had an ambulance blue light me to kings from margate and after transplant transport to and from appointment was provided for three months.

  • Hi Annette, Thrilling news. you must be scared and excited all at the same time ! Cauld be any day now, wow, fingers crossed and all the best to you. your post has given me the chuckle of the day Annette. You would have thought that someone might have mentioned the minor detail of if they provided you with transport! All the best. you deserve it. annex

  • Good luck sweetie! I'm thinking of you!

    Sounds like they might be checking to see if your levels in blood vary from week to week? But I am not sure!



  • Thank you for your advice I will ask them why more blood tests. Annette

  • Hi there great that you passed for listing.

    Now the waiting starts, hope it is not too long. They will explain all to you but you will never be able to be more than half an hour away from home. You can go away but have to tell them and they suspend you from the list and put you back when you return. We decided to just stay home and wait. We were very lucky it was only 9 weeks but that was because his blood group can take a liver from some other groups.

    Good Luck

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